What it’s Like to Live with Chronic Pain

You may have noticed that I haven’t been up to much this month. Part of that is due to lots of changes happening here, (good changes!), but part of that is due to the massive amounts of pain I have been in. I am one of 100 Million Americans that suffer from some form of chronic pain. According to many physicians, it is debatable as to the source of my chronic pain, but I know it is from Lyme disease. I took a test that came back positive and although some don’t believe in it, I know it is the source as I have lived with this pain for a lot of my life and it has gotten progressively worse. Regardless of the source, chronic pain is a huge part of my life and as such, I think it is time to dispel some of the myths surrounding it so you can understand where I am coming from (or where a loved one in your life is coming from.)

What it’s Like to Live with Chronic Pain

It’s exhausting. If I didn’t already have fatigue, being in pain will cause it. It is simply exhausting to be in pain all day because the body is just tired of having tense muscles, and shots of agony throughout. I may tire easily or I may just simply be tired in general all day. The fatigue can even take a mental form. Please know that I am not being lazy.

It’s annoying. Sometimes, I just want to know what it feels like to not have pain. Even when I take pain medication or do yoga or meditate, I still have pain. I get annoyed with it. This sometimes makes me cranky. I don’t mean to snap.

I hate taking pain medication. I really do. I only take it when my pain is intolerable, which is usually at one point on most days in the evening, but sometimes I skip a day here and there. I don’t like using pharmaceuticals. It really bothers me in my soul. Sometimes, though, it is a nessisary evil.

I have gotten good at pretending I am OK. No one wants to listen to someone say they feel like crap all day every day. I have gotten pretty good at hiding it or at least saying I am fine.

It’s humiliating. This is a big one. I am only 33 years old. It is humiliating to use a cane sometimes, cry going up stairs, feel good for a while and then have to explain to people why I can’t just do a 5k right now like I did a couple months ago, or even ask my doctor for pain medication. I feel like some sort of drug addict even asking for them even though I use them the way they are designed to be used. Since people can’t see pain, I feel embarrassed when it gets in my way or makes me look weak or helpless.

I miss the person I used to be. I feel like I am often a complainer, a cynic, and a grouch. I miss being a social butterfly, and a fairly active person. I miss feeling like I could do anything.

The pain doesn’t get easier the longer I deal with it. I don’t get better at coping with it, either. In fact, I sometimes feel like I get more frustrated and jaded.

I don’t use my pain as an excuse. If I ever have to cancel plans, or are late for something, can’t do something I said I would or quit early and tell you it’s because of pain, I mean that. I would never use it just to get out of things and trust me, it really bothers me and cuts away at my self esteem when I have to admit the pain got a hold of me like that.

I have been to more doctors that you can imagine. I have been laughed at, scoffed at, ignored, and treated like I am dumb by more medical professionals than I can count. I have a very long list of trust issues with the western medical community and if I didn’t sadly need them to find relief, I would just turn my back on them the way I feel they did with me. I have tried special diets, exercise routines, physical therapy, essential oils, rain dances, prayers, special clothing and “cures” as you can dream up. When I say something is working for me or not working for me, just trust I know my own body and how much I have patience to put it through at the time.

Sometimes I feel negative and like giving up. Not giving up as in ending my life, however I have thought about giving up on fighting this fight and just letting nature take it’s course. I have days where I feel this raw emotion. It’s just part of the deal. It may upset you, bother you, hurt you and you may not understand it, but just know it’s just where I am at the moment and I will snap out of it.

I feel lonely. It’s hard feeling like you are a burden on those you love and it’s equally hard feeling like in order not to annoy those you love youi should just not voice how you are really feeling all the time.

It hurts everywhere. When you do hear me say I am in pain, know that it usually hurts everywhere. It’s not usually just in one place. What does it feel like? Stabbing, shooting, aching, pounding, and burning depending on the day.

I have good days. Sometimes, I may not be in as much pain and I can do awesome stuff. This is a good day and even though I may pay for it later or the next day, I cherish every good day and take full advantage of them!

(Side note: I don’t pretend to speak for all people with Chronic pain. This is just my personal account. Thank you for listening.)

Well said, I have been dealing with chronic pain for nearly 20 years. I am 47 so for almost half my life and bipolar as well so believe me I get it. It is dehumanizing to be treated poorly by the doctors who are meant to guide us in the areas we aren’t trained in, and to now be told that we need to start whining off the pain meds????? What then??? I mentally cannot deal with my level of pain without help and I do not over medicate. I have had the same script for 6 or 7 years and am now told that I take double what is allowed all of a sudden??? Why has it been ok for all these years and now it’s way to much???

You said you are not speaking for others, but you just detailed my experience with CRPS/RSD virtually 100% accurately ! … I am a 57 year old Australian counsellor (specializing with chronic pain clients) who is also a College Tutor in Diploma level Counselling as well as a professional musician / entertainer. Some days I can manage to do what I need to do, and be who I need to be .. other days, I struggle to be ‘normal’ enough to get out of bed, dress, walk and talk and basically function in any way .. So I relate to your blog piece here, big time, and truly ‘get’ the emotion behind every word you’ve said .. Thanks for sharing .. Blessings to you and be safe sister ! Cheers, AJ

I hear you! I had a spinal cord injury Jan 2014. All of this is SO true, especially the exhausting part. Then I feel bad for sleeping when I can, mid day, afternoon, early evening, whenever. But I have also gotten really good and putting on a happy face.
Great article.Stephanie Daigneault recently posted..Mortimer Farms Sweet Corn Festival in Dewey, Arizona

I have fibromyalgia, rheumatoid arthritis and osteoarthritis as well as having my thyroid removed so I hear you on the pain level. I have been fighting for almost 5 years to get on some sort of disability and finally had my hearing today. I will find out in the next 60 days if they think I qualify. I will keep you in my thoughts and prayers.

Thank you for your thoughts; I’m sorry to say that most of them, I share. I have had severe chronic intractable pain for over 30 years, caused by a long story 😉 and though I would never take my life, I sometimes wish I could just get it over with. Despite the pain, I try to be a happy person, but some days, it’s really hard. Blessings of relief to you and to anyone who shares this awful scourge.

I have had the hardest time over the past 15-17 years. I have status migrainious which means I started out having migraines when I was in high school and they have progressed to now having a very painful headaches everyday, all day long. The doctors have literally tried everything the only thing I have not been able to try is the Botox because I have a huge deductible with my insurance plan. Truthfully I have not had a doctor yet that cared enough to actually try to find out why I have them. All the doctors want to do is give me Rx after Rx to try and mask the pain. It doesn’t work. I hate that my family and to suffer with me. I don’t ever feel like getting out with the family any more. I too always want to sleep because if I am asleep I am not hurting. I have basically lost hope that I will ever feel like a normal human being. Thank you for sharing your story and letting me share mine. Others do not understand, they just tell me to try things I have already tried. Nothing seems to help.

It’s so hard to go through this kind of pain and feel so alone. I sometimes wonder if the people around me who are kind, understanding and considerate to me wonder how much I am faking. No one wants to live like this. I know how you feel and I agree with many of your thoughts here. Sending my love and gentle hugs your way, Marie.

Thank you, thank you, thank you for articulating what so many of us feel. It makes me feel better just to read about someone else who is on the same journey. I live in small town Oklahoma and virtually no one believes I could possibly have so many health problems. Despite several family members going to the doctor with me ( including my husband) and hearing from a professional what I am dealing with. You do learn to just not say anything about your health. Thank you again for letting me rant. Lol.

Thank you SO MUCH for posting this! I have been suffering with pain for almost 22 years (gonna be 22 in May). I was born with sickle cell anemia which is a blood disorder that cause the healthy red blood cells to change shape and block blood flow wich results in severe pain. I had a transplant in 03 but im still in pain every day. And i have a TON of scar tissue in my lungs from the sickle cell. And caused several strokes when i was 7.So now im on oxygen It iseapecially frustating when those that have been with you for your entire journey still dont really understand how bad it really is. Like number 4 that youve posted, it is EXTREMELY embarrasing when i have to go out because of how people look at me. One time a 8 year old girl held open a door to panda expresss because i was out of breath, wearing oxygen and had to be put in a wheelchair to be pushed by my mom. Yet my mom and sister just tell me to ignore them.
Seriously?! HUMILIATING! HUMILIATING! HUMILIATING!
Im 21 and is needing to have help showering and getting dressed like a 3 year old.
My 2 year old cousin asked why cant i play with her and i burst into tears. I feel like a liability at times. I cant do 85% of normal activities like taking a shower or playing with my dog. Ive given upon going to healing services at church because it was too discouraging watching everyone around me get their healing and not me.

But even though my life sucks at times i know none of my pain is in vain.
Isaiah 66:9 ~ERV
“I will not cause pain without something new to be born.” The Lord says this, ”

Psalm 77:1-2, 7-15
Genesis 50:20
Hebrews 13:8

I KNOW that none of it will be in vain. That ALL this pain, this seemingly never ending nightmare, will be used to help people .
God will bring me through this battle. Even though i literally haven’t had
a day in my whole life without pain. He has to cause He promised

Hi there Devyn, Thank you so much for sharing your story with myself and my other readers. Your words are truly encouraging and relate-able. I always try to remind myself that my pain is all for a reason, too. I wish you good pain days ahead!

Hello, My name is Maurethia and I’m 46years old. I have been fighting to learn what is going on in my body that I have pain all over me. My doctors don’t talk to each other and I have about six doctors but nobody can tell me why they have me on 13 pills everyday. This has been going on since 1998 until now. In 2012 I trusted my back doctor and had surgery on my lower back. It didn’t help I lose my job and apartment, car, had to move around until now. I lose my health care insurance, so doctorsstop seeing me. Until about 4yrs ago when I moved back to Louisville, Key to be close to my daughter and grandchildren so they could help me. I’m just trying to understand what this is and can I get some help. My family doesn’t want to help me anymore. They don’t say it, but stopped taking some of my calls. I have trying to get disability andY have been told No five times. My husband to be is tryingto understand, but I know he doesn’t. Because I don’t. Just find out that I have to give up my lady parts also. I’m depressed, mood swings, gain and lose weight, anxiety are some other things that have showed up in my life. Can someone help me get some answers to the questions I need to be asking? Thank you. I’m not lazy or weak at all. I just want and need some answers now. Thank you again. I know everything you all are talking about.

Hi and thanks for putting into words so eloquently what I feel about my own chronic pain. I have had Lupus for over 20 years and while the drugs help the disease the pain remains as a daily reminder, like you I make the best of good days in fact I’m paying for Saturday’s good day where I danced at my cousins party and am fatigued with an extra painful knee, It was totally worth it.
I wish you well for the future.
Lisa

Thank you! Sometimes knowing you aren’t the only one is a great comfort. I totally understand and experience all of the things you mentioned especially the part about missing the person you used to be. I grieve for the old me more than most anyone could imagine!

This speaks so much to me! It was almost like it was written for me! Minus the pain meds, as they don’t actually work for me (at least they work for you), this is pretty much exactly what I go through.

Sometimes, I find myself wishing people went what I went through so that they’d stop the comments. They would understand then.

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Hi! I'm Christine! I'm an Eco-friendly, frugal living 30 something hippie at heart Mom of teens with dreadlocks. I love fitness, yoga, and enjoying life wherever I happen to be planted at the moment which currently is the Pacific Northwest. Read more...

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